Updates

March 3, 2021March 3, 2021
Certain Coping Strategies May Help Boost Life Quality for Young Patients, Parents

Children with epidermolysis bullosa (EB) who accept their condition and emotionally detach themselves from it tend to have a better quality of life than children ... Read more
February 26, 2021February 26, 2021
What ‘Rare’ Means to Me This Rare Disease Day

A few days ago, a friend working in healthcare communications asked: “What does rare mean for you?” It got me thinking. I answered: “Rare is ... Read more
February 26, 2021February 26, 2021
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a ... Read more
February 24, 2021February 24, 2021
Umbilical Cord Stem Cells Eased RDEB Symptoms

When injected into the bloodstream, mesenchymal stem cells (MSCs) — cells that can grow into different cell types and have potent regeneration properties — can ... Read more
February 22, 2021February 22, 2021
Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research ... Read more

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January 23, 2018January 23, 2018

Factors Beyond COL7A1 Mutations May Contribute to Dystrophic EB Forms, Study Suggests

A study from Spain has raised the possibility that the development of dystrophic epidermolysis bullosa (DEB) could be attributable to additional factors besides mutations in the COL7A1 gene. Researchers reached this conclusion after studying three unrelated patients with different forms of DEB ... Read more

Updates

Certain Coping Strategies May Help Boost Life Quality for Young Patients, Parents

What ‘Rare’ Means to Me This Rare Disease Day

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Umbilical Cord Stem Cells Eased RDEB Symptoms

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Subscribe to our mailing list

How We Began Educating Our Community About EB

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Fighting for Insurance to Cover My Son’s Lifesaving Bandages

Staph Infections Prevalent in EB Skin Wounds

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

By Focusing on What I Can Control, I’m Finding the Good in 2020

Phase 3 Trial of EB-101 Cell Therapy Seeks to Complete Enrollment This Year

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

NORD’s Caregiver Respite Program Continues Through Pandemic

Trudging Through Difficult Days With Corneal Abrasions

INM-755 Cream Fares Well in Volunteers With Open Wounds

4 New COL7A1 Mutations in Self-Improving DEB Identified in Case Report

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Wrestling With the ‘Why’ When My Son Is in Pain

FDA Names Potential Topical Gene Therapy for DEB an Orphan Drug

Christmas Is the Season of Family, Love, and Harmony

EB May Be More Common Than Thought in Netherlands, Dutch Study Finds

Cord Blood Platelet Gel Leads to Faster Wound Healing in RDEB Children, Study Says

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

A Few of Our Favorite Things

INM-755 Cannabinol Cream Shows Good Safety Profile in Healthy Volunteers

My Favorite Summer Dresses

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

Factors Beyond COL7A1 Mutations May Contribute to Dystrophic EB Forms, Study Suggests

Certain Coping Strategies May Help Boost Life Quality for Young Patients, Parents

What ‘Rare’ Means to Me This Rare Disease Day

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Umbilical Cord Stem Cells Eased RDEB Symptoms

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Subscribe to our mailing list

How We Began Educating Our Community About EB

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Fighting for Insurance to Cover My Son’s Lifesaving Bandages

Staph Infections Prevalent in EB Skin Wounds

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

By Focusing on What I Can Control, I’m Finding the Good in 2020

Phase 3 Trial of EB-101 Cell Therapy Seeks to Complete Enrollment This Year

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

NORD’s Caregiver Respite Program Continues Through Pandemic

Trudging Through Difficult Days With Corneal Abrasions

INM-755 Cream Fares Well in Volunteers With Open Wounds

4 New COL7A1 Mutations in Self-Improving DEB Identified in Case Report

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Wrestling With the ‘Why’ When My Son Is in Pain

FDA Names Potential Topical Gene Therapy for DEB an Orphan Drug

Christmas Is the Season of Family, Love, and Harmony

In Social Situations, I’m Learning How to Stretch

EB May Be More Common Than Thought in Netherlands, Dutch Study Finds

Cord Blood Platelet Gel Leads to Faster Wound Healing in RDEB Children, Study Says

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

A Few of Our Favorite Things

INM-755 Cannabinol Cream Shows Good Safety Profile in Healthy Volunteers

My Favorite Summer Dresses

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe